I’ve been having lots and lots and lots of investigative tests recently because of being anaemic for a year and because of many other odd symptoms - in more than 1 part of my body - that have yet to be explained away.
I’ve had a mammogram, an endoscopy, a colonoscopy, ECGs, a CT scan (that went wrong), an MRI, at least 4 ultrasounds (of separate parts of the body) and numerous other checks, blood tests and stool tests, just in this one year.
The symptoms, body changes and pains remain and the investigations roll painfully slowly on.
I am due to get some important results back - in a conversation with the relevant specialist doctor - tomorrow. The prospect of this chat tomorrow has been weighing very heavily on me since I had the test done last week, and my attention span has been abysmal (much shorter) during this span and in many other ways I have been catching myself feeling unusually anxious.
How do you all deal with anxieties about things that are happening to your body / mind or that might be happening to you?
I find the fears about cancer sit in a particularly nasty category of anxieties. The cancer ones, for me, are the fears that - when the symptoms are still unexplained - are nastiest of all.
Tests are a horrible waiting game - tell me how you face up to your fears or even how you run away from them! Whatever’s worked for you, I want to hear it, please.
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Well, Geogeor, you must have seen as many - ologists as me during this last year. I’ve also seen several in the previous 2 years. I’ve had several diagnoses - Peripheral Neuropathy; nerve entrapment syndrome; Inflammatory bowel disease which I’m able to add to two cancers and osteoporosis which I was diagnosed with ten years ago. My health problems just roll on and on and it gets to the point where if I dwell too much on them I feel miserable. I try to distract myself with hobbies and interests. I’m currently being investigated for a GI cancer and I must admit that I’m not being quite as gung ho about this. I tell myself that if there’s anything there it’s better that it’s found but it’s not easy.
It’s also helpful to acknowledge that someone else is dealing with all this. You’ve done your bit by consulting your doctor and having the appropriate investigations. Don’t worry about what you can do nothing about.
I’m having problems sleeping at the moment as my mind is racing. Last night I decided to play a little word game where I had to find a medical condition I’d been treated for for every letter of the alphabet. It was a bit depressing that I got to Q before failing to find one. I eventually fell asleep after reverting to counting sheep. OH was very amused this morning when I told him about my little game. He thought of a Q word straight away:
Oh Morecambe Bay, you know exactly what I’m talking about.
What is your hair like? My hair is quite unruly. All my life, hairdressers have looked pained when they see me “so how you style it?” or refused to give me certain hair styles, so sure are they that I can’t get away with them.
And it’s a similar thing with doctors’ reactions to a patient with more than one issue. As soon as you have more than one problem, they look so perplexed - as if you are somehow just trying to make their life more difficult.
I’ve never understood that face. Why not rise to the challenge, do your best, be polite and stay quiet?
PS. I’m being investigated for GI things - could be cancer, could be 100 other things, too.The GI diagnosis process seems the least efficient and well-ordered of all areas of medicine. I’m getting one test at a time at 2-3 weekly intervals. Each of which only covers one aspect or part of the GI area. I could still be having tests in 2023, at this rate.
How far into it are you? And which tests have you had done or are you about to have?
I’ve had gastroscopy, colonoscopy, abdo CT scan with contrast, ultrasound of gall bladder and many blood tests.
Pain is consistent with Pancreatitis or Pancreatic cancer and stool supports that thinking. Next the C19, amylase and lipase blood tests which are fairly conclusive.
I’m afraid that doctors don’t do much ‘joined up thinking’ and so we have to wait far too long between tests etc. This isn’t good for any health conditions, but sadly some cancers are diagnosed far too late because of this laissez faire attitude.
Yours is exactly my experience of gastro tests.There is no point in having 2 week cancer specialist referral times in the NHS unless the specialist then also motors through tests to their diagnosis.
I now know why so many are diagnosed with cancer after arriving in A&E with a major problem that hasn’t been properly investigated while they were in the community. All of whom have much worse prognoses than any whose cancers are picked up sooner.
January 2020. Was thought to have gall stones but scan of gall bladder revealed nothing. After endoscopy, diagnosed with hiatus hernia and ulcers. No H Pylori. ???? PPI for 5 months didn’t improve anything. Then began to have severe stabbing pain through upper abdomen into back with pain radiating into shoulders.
How has it taken so long to get to where you are now? Covid and waiting lists?My stomach pains began mid July. They weren’t sufficiently investigated when I went to A&E with them twice. And I still - even with private treatment - am not much closer to a diagnosis.
Can I please ask you a couple of questions about GI diagnoses. So far, my abdomen U/S scan was fine. My endoscopy today was fine. I am now booked in for a small intestine CT scan next week. I have had a positive result for H pylori and one go of pylori meds and don’t yet know whether that was successful.
The GI doctor took biopsies today for H pylori and I don’t know what else. Said it all looked fine.
Symptoms: I have had - since a few months - stomach pain underneath and below my ribs on the right that sometimes encircles my back. And burps and constipation, but the kind that leads to frequent, small bowel movements.
What am I needing doctors to look at, to rule out now, please, when I have the CT scan? And what else if anything have I missed? All I can think of are the pancreas blood tests and a transvaginal scan. Thank you.
Slow Dragon, I’m so sorry but I don’t know where I’ve put my most recent blood test results. When I find them I will report them. And I am so foggy of brain, I don’t remember the exact vitamin type, brand or quantity I am taking. I have just started taking a daily fizzy Vit C pill in water, to aid iron uptake. And a Vit D pill (can’t remember amount) and a slippery
elm pill, the last one on someone here’s recommendation.
When I have discussed the possibility of l Sheehan syndrome with my haematologist, they ruled it out because I was able to breast feed my second child and it was when I had my first child that I lost all the blood.
I mentioned DIO2 to the (thyroid U.K. approved) endo I saw. He ruled that out of hand, too. What are the symptoms or tests for it?
You really went through it ALL, Slowdragon. How many months / years did that take you? And how long were you ill like that for?
I stopped being GF earlier this summer. I’ve never been DF. I don’t always take the same brand of levo. I take what I am given.
I do not tolerate oral iron supplements. They make me very ill. The above ferritin level was the highest result I’ve had all year. Ferritin can go up when you have inflammation - I wonder if it was that.
Since these blood tests were taken, I have had an iron infusion.
For my thyroid I take 150 mcg levo a day.
I don’t take B vitamins but it looks like I should. I do take Vit D but haven’t had that level tested in a few years.
I am not sure whether my GP will raise my TSH dose but I will try. When I discussed this with them they said I should stay on the same dose.
Some question - blood loss in childbirth - in my mind about whether I need to be investigated for secondary hypothyroidism. Someone wrote a great summary for me here about Sheehan’s syndrome.
I can’t take iron supplements any more. They make me so ill!I am going to take tranexamic acid and try to get a Mirena coil so that I don’t lose more iron every month.
If serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months, then once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.
Do you mind telling me what kind of job you did in a parallel universe? I am fascinated to know.
What I realise - reading about B12 - is that it is a condition that PPIs would make worse.
I had to take omeprazole (a PPI?) in early September because of an H Pylori infection. And I was much worse after a week taking it. I also had to take it last autumn.
Many of the other things tested for were less usual things like Hep A and B and other auto-immune conditions.
I won’t include them because they were all fine but the results that stood out, because too high, are:
Transferrin 56 (25-50%)
Serum iron 34.3 (15-30) umOL
IgM 2.91 (0.53-2.23) g/L
I had just had an infection and finished a course of antibiotics for it. Would this explain the high IgM?
I also had an iron infusion in September. I wonder whether this explains the high transferrin and serum iron levels?
Also
B12 371 (200-770)
Folate 3.4 (3-20)
And
Ferritin 39 (13-150) [shocking - 13 is considered normal?]
I am having some new quite concerning symptoms in the mouth and throat and have spotted a lump in the back of the neck. These don’t seem to be connected to my thyroid. But I know, at this stage, less than nothing about what is happening / causing it - 1) the ultrasound done of my thyroid and of the glands at the front of the neck was fine, and 2) they didn’t check the back of the neck then and 3) I think my Sjogren blood tests came back negative which meant that 4) the consultant said I didn’t need a lip biopsy. Annoyingly I only felt the lump in the back of my neck the day after I saw the specialist. I am now hoping to get an MRI of the neck / throat done this week.
Always test thyroid levels as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
Only test early Monday or Tuesday morning and then post back via tracked postal service
I’m taking vitamin D, a multivitamin and a starflower oil supplement. Will check if my multi Vit has vit B in it. And what level of D I take. Thanks.
The excellent GP I spoke to this week who only works in our practice 1 day a fortnight it seems (shout out to all the extremely brilliant GPs like her, but consistency is so important when you are in a complicated medical situation) has just sent me off to have more blood tests for:
We never recommend multivitamins to any hypothyroid patients on here
Far too little of what we do need.
Usually cheap, poorly absorbed ingredients
Most contain iodine not recommended for anyone with Hashimoto’s
Multivitamins are useless for anyone actually low in vitamins…..As demonstrated by you ongoing extremely low vitamin levels
Suggest you stop the multivitamins
Instead
supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial. This can help keep all B vitamins in balance and will help improve B12 levels too
Thorne Basic B or Jarrow B Right are recommended options that contains folate, but both are large capsules. (You can tip powder out if can’t swallow capsule)
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
With serum B12 result below 500, (Or active B12 below 70) recommended you should also be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months, then once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.
My multivitamin is the cheapest offering Lidl can do. On the plus side it doesn’t contain iodine. It says it contains 100% of recommended B12, B2 and B6, among others, but I will invest in something better.
The Vit D I take is 25 funny symbol g / dose (500% of NRV). Again super cheap and I’ll upgrade.
It’s very important when in day you test TSH ....should always test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning,
delay Saturday evening dose levothyroxine until Sunday morning.
Delay Sunday evening dose levothyroxine until after blood test on Monday morning.
Take Monday evening dose levothyroxine as per normal
“According to the current TSH reference interval, hypothyroidism was not diagnosed in about 50% of the cases in the afternoon.”
“Further analysis demonstrated inadequate compensation of hypothyroidism, which was defined in 45.5% of the morning samples and in 9% of the afternoon samples”
If delaying taking levothyroxine until after blood test, you likely want to not eat or drink anything apart from water before taking levothyroxine
It may (or may not) make a difference to TSH if fasting ….opinions differ
Have you or the rest of the forum thought of setting up an Amazon shop where all the things you recommend are in one place? And where a proportion of what we buy comes back to .. a thyroid charity? I need a good reason to shop there.
I get it Georgeor. With the notable difference that I have literally given up on doctors. I have no faith in them spotting anything. They missed my mother’s cancer. They missed my husband’s cancer. If my father hadn’t paid privately for an MRI on his hip which showed up a mass in his bladder they’d have missed his cancer too.
I know they’ve got an uphill task, trying to work out which of the 100s of patients they see every week really has something wrong with them, and which have something which is self-limiting and will fix itself given time.
But both my mother and my husband presented with symptoms that weren’t taken seriously, brushed under the carpet. Neither were the sort to go to the doctor’s with something trivial (far from it). Yet they were both treated as though they were malingerers. My Dad’s cancer developed during the pandemic and even though he was attending his practice every week to get a leg ulcer dressed he could not, even begging, get a face to face appointment with a doctor, despite escalating symptoms and unbearable pain. Time will tell as to whether he had surgery in time. My mother survived 2 years after diagnosis. My husband survived less than 3 weeks.
I’m feeling so incredibly low at the moment and ridiculously tired and headachy. My latest round of thyroid and vitamin blood tests don’t actually look too bad—nothing obvious there except a ferritin level that could probably do with a slight boost. If I thought for a second there was any point to going to the doctor with such vague symptoms… well, let’s get real. I don’t.
No point to this really except to say, I hear you. And maybe this is just what it’s like to be a 51 year old woman (menopause happened nearly five years ago, just after my husband died, so it’s not that).
With the notable difference that I have literally given up on doctors. I have no faith in them spotting anything. They missed my mother’s cancer. They missed my husband’s cancer.
My experience is similar...
They missed my mother's cancer and my mother-in-law's cancer. My mother lived for about 7 months after finally getting a diagnosis, and my mother-in-law lived for less than three months. Both were treated as if they were attention-seeking malingerers for many months before finally getting a diagnosis.
Doctors are encouraged by the CCGs and the government not to refer to secondary care. And as we know, even if someone is referred, they are often refused treatment.
I think that current government policy is to drive as many people into the private sector as possible by making it impossible for the NHS to treat through lack of staff and money. And the government wants people to hate the NHS so they can shut it down and make it all private. But what percentage of the population can afford private treatment? I think it must be tiny. But the thing is that I don't hate the NHS. I hate the medical profession for the never-ending gaslighting, disbelief, rudeness, insults, dismissal, and the apparent total incompetence.
The incentives are all in the wrong places.No-one is paid for giving good treatment, they are paid for telling people that the chances of them being seriously ill are small, and they don’t want to consider the possibility that the person is in that bracket.
If you wait long enough to refer your patient, they’ll be dead anyway, so why refer? Seems to be the logic behind the attitude we see.
I just wanted to reach out to you Geogeor, as I also have suffered with terrible anxiety. My GP diagnosed ‘health anxiety’, but most of my symptoms were related to being under medicated thyroid wise. I had some CBT with a psychotherapist which did help me cope with anxiety symptoms better; have you been offered this?
I don’t mean to sound like a crushed victim but I find that one of the side effects of endless waiting times (NHS) and poor case admin / management is that you give up hoping for more than the minimum service level.
How did you know when your thyroid levels were optimal? What level was your TSH eg? And who helped you get there?
Members of this forum helped me Geogeor. I followed advice to test privately for antibodies, T3, T4 and key vitamins (I used Medichecks for this), posted results on the forum and then supplemented to improve vitamins (following advice of SeasideSusie ) I then went to my GP/ endo armed with results/ facts to improve my thyroid medication. I only felt well when TSH was under 1, key vitamins optimal and T3 and T4 higher in range.
Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.
NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when OPTIMALLY treated with just Levothyroxine
Note that it says test should be in morning BEFORE taking levothyroxine
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance.
But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
Although having the ranges for these results would help, assuming they are fairly average ranges then all these results are absolutely dreadful, but I'll wait to see what the ranges are before commenting on them.
I could be confusing you with someone else, but did you say in one of your posts that you lost 1.6L of blood during childbirth?
One possible consequence of such a large blood loss is developing a condition called Sheehan's Syndrome.
The large blood loss causes necrosis of the pituitary, and as a result the person ends up with hypopituitarism i.e. low levels of the hormones produced by the pituitary. It can end up with one hormone being low, or several, or all of them. For such a tiny organ it produces a large number of hormones.
In the above link, in the causes section (vascular), it says :
As a pregnancy comes to term, a pregnant woman's pituitary gland is vulnerable to low blood pressure, such as may result from hemorrhage; pituitary damage due to bleeding after childbirth is called Sheehan's syndrome.
Like so many other problems that only affect women it can be very difficult to get a diagnosis of Sheehan's Syndrome (if it applies - please remember I'm not a doctor). I suggested this diagnosis to another member of the forum (unfortunately I can't remember her name), and after a long time she did manage to get tested and diagnosed but it was a huge struggle for her.
Yes I spoke to a specialist (haematologist) about the possibility of Sheehan’s and they said that if you are able to breast feed after a major blood loss, you don’t have Sheehan’s. I managed to do so twice, so by that logic I don’t have it.
That’s a classic case of confusing cause with effect. Not being able to breastfeed can indicate Sheehan’s. However, that doesn’t mean that if you can breastfeed you don’t have Sheehan’s.
Someone’s read that, got it confused and has stated their misunderstanding as fact. You despair really.
I definitely wouldn’t rule out Sheehan’s as the original cause.
I would say there’s a couple of ways—testing pituitary function and/or CT scan/MRI of your pituitary.
But a CT/MRI might not show anything up and the pituitary function tests might not be conclusive.
I thought this was quite interesting when I looked it up:
“In most cases, the symptoms of Sheehan syndrome do not appear until months or even years after severe blood loss after childbirth (postpartum hemorrhage). In rare cases, the symptoms of Sheehan syndrome occur within days and include an inability to produce breast milk, a drop in blood pressure, visual problems, and unconsciousness. These symptoms may be life threatening. In other cases, severe symptoms become apparent when the body is stressed by infection or surgery some period of time after delivery.”
Sort of knocks your haematologist’s idea on the head (another cause of Sheehan’s by the way )—they were thinking of that rarest of cases rather than what more frequently happens with Sheehan’s.
To be honest, this largely boils down to whether this is a secondary hypothyroidism problem (i.e, pituitary failure) rather than primary hypothyroidism (where the thyroid itself is at fault). In a way, it doesn’t matter what causes secondary hypothyroidism as the treatment is the same—except, in the case of secondary hypothyroidism you can rely even less on what the level of TSH is telling you about the adequacy of thyroid hormone replacement.
One thing I could mention here is that you have every reason to be anxious about your health.
And another thing... When I was suffering from below-range iron and very low in range ferritin, my anxiety was through the roof too. The anxiety diminished the more I raised my iron and ferritin. My very low iron and ferritin was caused by a GI bleed, and I was bleeding for several years before the cause was found - a very large polyp. When it was removed and the bleeding finally stopped I was more or less left to my own devices to raise my iron and ferritin myself.
Thanks Human Bean. Where was your polyp, out of interest? My knowledge of where you can get polyps is next to non-existent. Am glad you got your levels up to normal eventually.
I think polyps of the kind I had are generally found in the bowel (as mine was). Luckily mine wasn't malignant. I haven't heard of them being found in the intestines, the stomach or the oesophagus, but then I haven't really looked for info on other sites where they might be found.
Thank you to everyone who commented on this thread.
So many worrying stories shared here about experiences of waiting for results and slow diagnoses and fighting for answers.
I drew so much sympathy and comfort from all your words.
We often talk about social media as a force for ill / social estrangement.
And yet I very well know the mirror image of those criticisms, judged by the work you all do to help one another here.
The results I have been waiting for since mid July for one area of my body are in, and they are fine. I don’t have the type of cancer I was being tested for there. I still have another part of the body that I’m having investigations on. I will come back and read this thread in the weeks to come!
I used 2 iron pills before my stomach fiascoes began. Now I cant tolerate one. I load up on red meat and more importantly eat lamb liver which is a game changer. I like to eat oranges right after since iron and vit c go hand in hand. Also I always take probiotic and digestive enzyme to help break it down in the stomach.
Liver is excessive in Vit A, so space it out, if you decide to include it in your diet.
Thank you. Have you tried any liquid iron? I also eat lots of meat but think I need to take liquid iron, too, to ensure I don’t go into the danger zone again.
Nope never tried it....too chicken. I dont want to upset my tummy and ive been a lil sensetive to a few supplement and meds before. Plus loading up on meat and eating liver brings me easily over the 60% range thank God.
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)—they were thinking of that rarest of cases rather than what more frequently happens with Sheehan’s. 
Can you choose a GP by speciality? (UK)
Is FT3 testing more common than TT3 testing on the NHS? What's the norm where you are?
Lots of health issues - can anyone help?
Can anyone help me reduce anxiety re health and morbid fantasies.
Can NHS test for the DIO2 gene?
